Does Anyone Else Lose Hair?

[kayjay]

I hate to be so vain but on top of feeling crappy my hair is really falling out. Does this happen to anyone else? Did it stop when you got treatment? I am still waiting to go to Mayo so maybe some other meds would help. Thank you!

[gertie]

I have been losing hair more than usual for the last few weeks but I associate it with Hashimoto's thyroid or the med I'm taking. I always seem to "shed" about once a year but I think that is normal. The hair has always come back but I'm not too sure it's going to this time. Do you see any short hair coming back? Maybe someone else can give you more info.

[Angelika_23]

Hi,

For a long time I lost a LOT of hair. I tried everything, tea tree oil, etc. Nothing seemed to help. Then it slowed down. It doesn't happen so much anymore, I'm not sure why.

I don't have thyroid issues, so that isn't what caused it. No one can tell me why it happened. I do notice if I'm having a bad POTS time I will lose more hair when I shower than "normal".

Sorry I couldn't offer any advice.

Angela

[HoudiniCat]

When I first got sick with POTS my hair started thinning out and I thought that it couldn't possibly be another crazy, seemingly unrelated symptom. Apparently it was though because since I've been feeling better my hair has come back and even better than it was before. Not sure why that happens - maybe the decreased blood flow to the head has something to do with it. While it was thin I treated it as gently as possible - no overbrushing/styling, tried to use as little product as possible and no ponytails.

[potsgirl]

The only time I've lost hair has been either from meds or high stress. Have you noticed the correlation between any meds you take and your hair loss? Are you under more stress than usual? The other thing I do to try to avoid hair loss is to only wash my hair 2-3 times a week. If you get really oily, you can use the 'dry' shampoos that are out there now. The more you wash and brush your hair, the more you can lose.

Hope this helps. Cheers,

Jana

[Broken_Shell]

Hi,

My hair was falling out when I first started getting sick. I am not sure what it can be attributed to, but here is a thought. Have you had your iron levels checked? Anemia and iron deficiency can cause hair loss. Other dietary deficiencies can also cause this. Have you been having more GI problems or changed your diet recently?

~ Broken_Shell

[futurehope]

I hate to be so vain but on top of feeling crappy my hair is really falling out. Does this happen to anyone else? Did it stop when you got treatment? I am still waiting to go to Mayo so maybe some other meds would help. Thank you!

I can relate. I take after my father who had most of his hair when he died, and I look ridiculous because my hair is thinning. It is so depressing, worse than POTS sometimes, because it DOES make you look older and sickly.

What I do is take 60mg of biotin once in the AM and once in the PM. This doesn't make the hair grow back but I feel like I'm doing something good. Make sure you're getting enough protein in your diet.

I went to a very good stylist to give me a shorter style and good color. The shortness keeps me from pulling more hair out and the nice color is a distraction from seeing what is going on.

Your iron levels and your thyroid levels need to be checked. Also, beta blockers and some other meds can cause hair loss. Autoimmune conditions can cause hair loss. If you have poor absorption in your gut from small intestine bacterial overgrowth, or you have Crohn's or anything that affects absorption of nutrients, your hair will be affected. If you have recently been through trauma, such as a bad POTS spell, or surgery or illness, this can cause hair loss temporarily until you recover.

If you can afford it, you can go to a dermatologist who will biopsy your scalp to see if there is anything abnormal showing under a microscope.

And in my uneducated opinion, I'm convinced it is a combination of the above. POTS must be doing something to the hair follicles in my case. I feel for you. Hair means a lot and it has been a major adjustment for me so I understand.

[EarthMother]

I tend to loose a lot of hair THREE MONTHS AFTER a stressor. Like a viral infection (I got chickenpox at 27 and I remember loosing a third of my hair three months after I had recovered), childbirth, divorce, or a bad POTS crash.

I do have Hashi thyroid, but I can't seem to corelate the hair loss to any particular thyroid cycle.

As suggested, Bioton is great. I take it anytime my hair is falling out in droves.

In my case, it always grows back.

As for the suggestion about frequency of 'shampooing' your hair -- there is a 'movement' of sorts of people who give up shampoo altogether. You can google "no poo movement" or no shampoo -- and you'll find a lot of articles and blogs on how and why people do this. And if it interests you, you can PM me. I've been no-poo now for over a month!! My decision wasn't linked to hair loss or scalp issues ... just when I read about the chemicals in shampoo, I thought why do I want to add this to the stuff my body is already fighting?

[tinkerbella]

i had really thick, long, hair. the hair was falling out each time i washed it. my rhumy suggested cutting it. i cut it shoulder legnth with layers. bought natural shampoo/cream rinse witout the chemicals. don't color my hair any more luckily i still have my natural color. i thought blondes had more fun once as younger, my hair was lighter. i try to wash it only once a week due to as the doctor suggested not to wash it more than that.

if i use a regular shampoo, i itch all over, but my head will drive me crazy itching. i'm on allergy meds 24/7. i found white vinrgar rinse helped with the itching.

at least i don't have bald spots as that what my rhumy looks for with lupus checks. in my case pot they feel there's another auto immune disease going on like lupus, so when i get new flares i get rechecked. i'm just soooooo tired these days, but i need to make an appointment to get to the city.

blessings and love~

BellaMia~

[kayjay]

Thanks for all of the info. everyone! I really think my hair loss is related to my POTS. I had a recently had a really bad episode that lasted 2 months. I have surges of panic that last for hours. My body is reacting to the stress I guess.

[Maxine]

Actually washing your hair has nothing to do with losing hair. In fact if you clog the hair shafts with oil and dirt you can lose more. My aunt always had thick hair, and she said her secret was brushing her hair forward with her head leaning down slightly. she kept her think hair until the day she passed away. It even grew back after radiation and having her head shaved, which was after surgery to remove a large brain tumor.

Stress, hormones, and reactions to certain drugs can cause hair thinning. Alopecia Areata is a disorder where people have bald spots, and then hair grows back later, but other times it never does. Example; my ex husband lost patches of hait about the size of a half dollar or quarter, but it always grew back. He said when he was in his early 20s before I met him he lost several patches. Today he has ALL his hair, and a thick head of hair at that--- . However, it's all gray, and he did go gray early. My son is only 28, and he's already starting with some gray hairs. My sister in law's brother had Alopecia Areata, and he went totally bald. He wears a hair piece.

http://en.wikipedia.org/wiki/Alopecia_areata

I sometimes feel like my hair is thinning, but other times it feels like it isn't. It's hard to see my hair in the tub after showering, as my hair is so fine you can't see it very well. I've been told I have a lot of hair, but it's fine. People mistakenly thought I had think hair, but I don't at all.

It feels a little thin in the front. I have hashemoto's thyroid disease, and I know this can happen with thyroid disease, but mine was found by accident, and Early. I hope I hold onto my hair. My poor mother's hair was thin most of her life. She went undiagnosed with thyroid disease as a young woman, and I think she suffered in many ways throughout her life because of it. She passed away in 2007 of cancer--------also undiagnosed until 48 hours before she died.

Maxine :0)

[tinkerbella]

now that i'm on thyroid meds i must admit i see less in the drain when i do wash it. i forgot to ask for a shower seat at the doctors last time. then i will feel safe to wash it twice a week, otherwise my hair gets too dry. going over the stairs is another issue when you live alone. i like to have someone in the house when i'm in the shower for safety sake.

my best friend has had alopecia for over 25 years and has had to get hair weaved in. she looks like a million bucks. she's very ill also, i'm blessed to have her to vent to. so when i say i lose hair, she kindly reminds me by showing me her alopecia. then i know i'm blessed and pray for those who really have it worse off.

[Maxine]

Washing your hair every day won't make your hair fall out. However, if your hair is dry only wash when you feel necessary. My hair is so oily that it looks bad if I don't wash it every day. I also get horrible "bed head" when I wake up. No matter what I have tried, still the "bed head". I think it's from "product"========gels, mousse-----all body building. See----It gives the appearance of thicker hair when it's really not--- .

I envy people with thick mops of hair that isn't excessively oil, and they don't have to wash it daily.

Maxine :0)

[ramakentesh]

Yeah but im a guy and Ive got a receding hairline. LOL. And its hereditiary...

[potsgirl]

New & Improved Causes of Hair Loss (you're right, Maxine and others, my stylist is WRONG. Washing hair daily/too much brushing does NOT cause hair loss), but these things do:

1. Illness and surgery ~ Usually occurs approximately 3 months afterward, due to stress.

2. Hormonal issues

3. Medications ~ Such as blood thinners, birth control pills, and anti-depressants

4. Infections ~ Usually fungal in nature

5. Certain diseases ~ Including lupus and diabetes

It's important to figure out why you're losing hair so that you know the cause and can treat it appropriately. Hereditary, POTS?, other reasons listed.

Cheers, Everyone

[mcaimless]

One of the most common reasons for hair loss is thyroid disease. I know some here have already been diagnosed but for those who are not, it's possible that you are being told you don't have a problem when in fact you do.

Any doctor who only runs a TSH test to screen for thyroid disease is not practicing good medicine. Literally millions are being underdiagnosed and untreated as a result, with very serious health consequences.

I recommend you rule out thyroid disease properly by getting the following tests:

Free T3

Free T4

Thyroid antibodies: TPO-Ab, TG-Ab

TSH

And don't let your doctor just tell you you're in range and normal. If you are not at the very top of the Free T ranges you are deficient in thyorid hormones. Anyone higher than 1.5 TSH is also suspicious for thyroid disease.

I went a very long time undiagnosed and am finally getting proper treatement. I hate to see others go through what I went through because so many doctors are seriously uninformed about this very common disease.

http://www.stopthethyroidmadness.com/

[futurehope]

One of the most common reasons for hair loss is thyroid disease. I know some here have already been diagnosed but for those who are not, it's possible that you are being told you don't have a problem when in fact you do.

Any doctor who only runs a TSH test to screen for thyroid disease is not practicing good medicine. Literally millions are being underdiagnosed and untreated as a result, with very serious health consequences.

I recommend you rule out thyroid disease properly by getting the following tests:

Free T3

Free T4

Thyroid antibodies: TPO-Ab, TG-Ab

TSH

And don't let your doctor just tell you you're in range and normal. If you are not at the very top of the Free T ranges you are deficient in thyorid hormones. Anyone higher than 1.5 TSH is also suspicious for thyroid disease.

I went a very long time undiagnosed and am finally getting proper treatement. I hate to see others go through what I went through because so many doctors are seriously uninformed about this very common disease.

http://www.stopthethyroidmadness.com/

Do you happen to have POTS as well? I wondered because I have a few comments and questions.

Comment: My TSH was 7.? I told my doctor that for years my usual was 1.? - 2.? This TSH of 7.? was despite my Free T4 being at the high end of normal?! I was constantly wiped out, unable to think, and basically feeling dead.

The doctor listened to me and increased my dose from .112mg/day to .125 mg/day. I now feel more alive- yayyyy!

The problem is, my resting heart rate is hovering in the 90's. Not good. I know us POTsys have a problem with tachycardia so I'm reluctant to mention this increased resting heartrate until at least 4 weeks have past since my dose increase.

Do you have any idea what I should do, being as I feel much better but my heart is going too fast? I'd hate to retreat and go back on the downward spiral of losing hair. Thanks in advance.

[tinkerbella]

my cardio wouldn't allow the increase my pc ordered for that reason alone. my heart is a ticking way too fast already, and he didn't want it going any faster. i'm glad there are several sets of eyes watching over my case.

when in doubt, check it out!

bellamia~

[mcaimless]

A couple of things (and yes, I do have POTS too), have you checked your adrenal function? Since you are on T4 as a medicine, you might be fatiguing the adrenals when your body is attempting to convert the T4 to T3. This causes what is called "pooling" (not the same as blood pooling with POTS) where you are dumping a lot of thyroid hormones because cortisol is low and it's vital to getting the hormones into your cells. The adrenals are best tested with a saliva cortisol test (I get mine through the Canary Club)

Also have you checked your free T3 levels? If your T4 is high and T3 is low then you are having problems converting. This might be from either the type of medication (synthetic T4 instead of natural desiccated thyroid), high cortisol from stresed adrenals, or due to vitamin deficiencies, especially D, B12, or Ferritin. These are all necessary to bring up to proper levels to get the hormones into the cells.

If you have Hashimoto's (were you ever tested for antibodies?) you can swing from hypo to hyper symptoms (hence the fast heartrate) and this requires some pretty agressive treatment with hormone replacement to get it under control and reduce the antibody attacks on the thyroid

I chose to go with desiccated thyroid as my hormone replacement. It contains both T4 and T3 and several other hormones that more closely match what our own thyroid puts out. I think it puts less stress on the body and the reports of those using it are pretty strongly in favor. Many are started out on synthetic T4 since that's what most doctors will prescribe but don't stay well on it for long. I really recommend Stop the Thyroid Madness as the most sane approach to treatment.

I hope this helps, feel free to PM me if you have any other questions. Check out the STTM website for a ton of info:

http://www.stopthethyroidmadness.com/